Wesley has Down syndrome but Down syndrome does not have him! He is a son, a brother, a nephew, a friend, a pretty awesome "shake your groove thing" dancer, a singer, an artist, a teenager, and an all out boy who happens to have an extra chromosome.
Why March 21? Its the 21st day of the third month...It was selected of course to signify the third copy of the 21 chromosome, which is the cause of Down syndrome! This World Down Syndrome day will mark its 8th Anniversary. This year the IDSC, a grass-roots non-profit group has joined in the celebration and challenged all the bloggers out there to blog today and help spread the word!
So today WE will not just celebrate Wesley! WE celebrate all the Wesley's out there! And of course not just today but especially today! We want to show the world that their lives have meaning! We want the world to truly value, accept, and include all the individuals with Down syndrome! We do this by not using the R-word, welcoming and including those with Down syndrome into our schools, communities and workplaces, and last but not least advocating for the individual's with Down syndrome! This can be as simple as sharing a link, photo, or video promoting awareness to Down syndrome, wearing your blue and yellow ribbons, or as dedicated as rolling up your sleeves and helping individuals and families with Down syndrome.
So today we wear our Yellow and Blue and our Crazy Socks!! In hopes that someone will ask "What does that mean?"
Grumpy....Moody.....Mouthy......I know that describes just about every teenager...but in our house there is an extra chromosome to take into consideration! Wesley is normally a loving, easy going kid who's smile lights up a room. But as with any puberty ridden child....that fades away and transforms into a huge ball of hormones! Of course we still see that loving,easy going kid every now and again...but the visits are fewer than we would like....so that inspired me to write a blog to help all those mom's out there get through those years. Here are my top 5 tips....
1. First and foremost....don't lose your sense of humor! You may want to cry right now but I promise tomorrow, next week or even a few years from now you will laugh about the situation you are in! There is nothing fun about hair growth in unusual places with Wesley, who can't even stand a tag in his shirt...but you and your child must learn to manage these changes and make the best of it....for me it was learning the hard way to make sure my razor is not left in the shower when Wesley gets in. Luckily he did not cut himself (I know) and I caught him before he got rid of too much hair!
2. Take Time for yourself. You are no good if you are running on Empty! It may be something as simple as a hot bubble bath, a trip to the grocery store by yourself, or a nice walk on the beach! (Yes I'm in Florida and that's as easy as going to the grocery store) But the important thing is to find something to recharge you batteries! For me I try to take a hot bath, have a girls night out, or run an errand by myself to give me a break! I don't have the luxury of a long break but even a minute break once a week is better than nothing.
3. Make special time for you and your child. It can be a elaborate as taking him to Disney just the family or as simple as sharing a jam session in the car with your child. Do something that your child likes! Anything just do it together! Wesley and I spend Thursday morning together riding to speech and then to school. Most mornings we jam to Big Time Rush. That is a special time for us and me make ton's of memories and laughs!
4. Connect with other parents with teens with Down syndrome (or your child's specific disability) They are a wealth of information! It's OK to Google and to research. But I have found more comfort and tried and true advice connecting with mom's who have been there or are there. Find a local support group! The National Down Syndrome Society has tons of links to local support groups! If there is not one, then start one! Facebook also has tons of groups with real people going through the same things you are! I have had the recent experience with some wonderful mom's sharing with me the tricks and tips that are working for them and have already started implementing them into our lives! Just being armed with their knowledge gives me strength! Even if just to vent about the situation. (Don't dwell on it though, that's not good, just get it off your chest!) But don't just vent about it...ask questions, ask for advise, ask for strategies...Then you are armed with knowledge and experience beyond your own! What more could you ask for!
5. Last but not least, REMEMBER your teenage will come back around...as Phil and Claire Dunphy put it in their most recent episode of Modern Family...Haley, their teenage daughter found her way around the "dark side of the moon" of teenage-hood and wanted to be "cool and friendly" with her mom again! Just remember that....this too shall pass! It's just a phase! It's normal! It's just a part of growing up!
I hope this reaches and helps someone out there who was feeling like I was and you take to heart these tips! Yes, you Welcomed Holland but that doesn't mean you don't need help and encouragement along the way!